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Daily Dis

I have so much dissonance right now; it’s depressing. I don’t know how to reconcile it all.

  1. I am sad. Not just because I disagree with many of the steps our new President plans to take and is now taking, but because of how divisive we’ve all become. Maybe we’ve always been this oppositional and I never noticed before because I am older now, and/or because social media’s presence in our lives is like a gossiping friend in our ear that never shushes up. 
  2. I am frustrated. There seems to be little objectivity left when it comes to standing by our leaders. When did it become all or nothing? Can’t we support a leader but not all of her/his points of view? Can we not disapprove of some actions without disavowing a whole person? 
  3. I am confused. I don’t know what to believe anymore. Clickbait and 24-hour news broadcasts have me running around in circles. How can we be impartial arbiters of the issues facing our country and world when our leaders shy away from the truth like it’s a spitting pot of boiling water?
  1. I am thrilled. Did people even know who their state or congressional senators were prior to this election? Did they know the difference?  I know I’ve never known the name of any other potential Secretary of Education until now, when it matters to me and mine.  People want to know and want to be involved. I feel like I’ve been waiting my whole life for this level of passion and activism from others. It tastes like a breath mint in my mouth.
  1. I am scared. Violence has become a commonly spoken language and I don’t understand what everyone is saying. We hurt some, refuse to help others, and call it the ‘American Dream’.  I want to be successful, too, but not at the expense of others.  I want to help fix what’s wrong within our own borders but cannot do so while ignoring the outstretched arms from without, begging for a piece of the peace I surely take for granted every day. We’ve built emotional walls around ourselves for protection and now it looks like we’ll build a physical one; however, the results will be the same: we’ll be stuck with what’s on the inside, not protected from the out.
  1. I am hopeful. So many people seem to believe what I believe and there is solace in that. So many believe that people should make decisions for and about their own bodies without government regulations, that all people deserve to marry for love, that Black lives need extra protection and support right now (still), that taking in refugees may be a hardship and that maybe there is danger involved and that maybe we aren’t prepared to help so many helpless people and that maybe it is the right thing to do and we should do it anyway.

So yeah, I’m all mixed up and it is distracting from, you know, trying to still continue each day and live life.  And yet, my five-year-old son clung to my arm this morning and told me that I was his true love, and all became right in the world for me.  Focus, peace, simplicity.  Proof that love is still, and always will be, all that we need to make the world go ‘round.

 


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Unsung Heroes: Sibs

I should have never doubted her for a second.

My girl, my first born, my continuous maelstrom of emotion and mood.  My Annika.

Tonight Annika was a panel presenter about what it’s like to be a sibling of an individual who has intellectual and/or developmental disabilities (part of a community educational series offered by The Arc Baltimore) and it will go down as one of the times I was most proud of her in both our lives.

Annika has been attending The Arc’s SibShops for almost a year now and it quickly became one of her favorite social events. For several hours a month it is all about her, her friends, and her fun.  And not about her brother.  And that is awesome for her, because her baby brother is on the Autism spectrum and it tends to take up a lot of our family’s time and energy which is not always fair to her.  At the shops, she and the other kids play games, cook snacks, do crafts, act crazy, and get to kvetch openly about how they feel about having brothers and sisters who have extra needs.  (Also, I get to go to Starbucks and sit quietly. Alone. And read.)

Anni is a friendly and outgoing kid, but still I was bit surprised when they asked if she’d be a part of this presentation.  She is only 8 years old and even the most gregarious of children can get shy when placed in front of a group of strangers and asked questions about a topic she may or may not completely understand.  Plus, she herself had recently been diagnosed with ADHD and Anxiety Disorder, so I was nervous about how she’d hold up under all that scrutiny.  She was all for it, though, so how could we say no?

Now of course, last night, both kids had trouble sleeping, so all three of us were exhausted and worse for the wear this dreary, rainy Tuesday (not my husband, though; he sleeps through it all the rat bas–, I mean, that lucky duck).  Considering that our kids usually go to sleep by 7:30, all day I have been dreading dealing with a tired, cranky, anxious Annika.  Throw in last minute dentist appointments in between school and the presentation, and I was certain that neither of us were going to get through the evening unscathed.

I’ll tell you what, though…Annika was super impressive.  She was the youngest panelist, joined by a 14 year old (and even more impressive) boy we’ll call J, a late 30’s mother of three we’ll call L, and a grandmother we’ll call C.  It was a long evening of sitting and having to listen which is not easy for Annika to do.  She was bouncy and distracted and played with water bottles, her bracelet, and alternated between dancing emo style in her chair and just slouching down so that her eyes were level with the table.  But when it was her turn to talk, she didn’t miss a beat.  She was on point, profound, sweet, funny, and yeah, a bit rambley at times, but it was audibly endearing to the people in attendance.

I’m sad that I didn’t record Annika early on because she was saying some of the sweetest things about her brother, but I couldn’t break away from just experiencing it:  hearing it in my head, feeling it in my heart, and memorizing it in my soul.

The whole discussion was truly eye-opening and perspective giving.  The range of experiences traversed generations and disabilities and really made it clear to me how much support is provided by siblings. They support the individual as their liaison to the outside world and possibly first (if not only) peer to peer connection, and they support the parents by handling all sorts of important tasks before, as many do, eventually supplanting the parents by having to eventually become their siblings’ primary caretaker.

We talk about this generation being the “sandwich generation” because of the number of people who are having to take care of both parents and children at the same time. But what about these siblings who are also part of an “appetizer platter”?  We take care of our kids because they are our kids, and we take care of our parents because they are our parents. But providing for brothers and sisters? That’s like a meal you didn’t order but have to eat anyway without getting to complain that it isn’t what you wanted off the menu.  It’s not fair and it’s not glamorous and it also isn’t often publicized.

There was another moment in particular, however, wherein the group became a single collective of emotion and spirit.

The oldest panelist, C, was describing the secrecy under which her brother with Down’s Syndrome was kept.  Forty to fifty years ago, she said, most kids like her brother were just called “the R word”and put in an institution.  Her family wouldn’t put her brother away, but nor was he allowed out in public or spoken of very much, either.  Then the mother of three, L, and others in the audience started discussing how times have changed and how “the R word” went out of fashion and has been replaced many times over the years.  The 14 year old, J, spoke about how angry it makes him when he hears kids call his brother, or other similar kids, “the R word” because he knows they mean it in a negative way.  And then Annika out of nowhere asks, “what’s the R word?”  There was a pause, and then someone spoke up that it stood for “retarded”, to which Annika replied, “what does retarded mean?”

And you could hear the whispers and wows and sighs of awe because she didn’t know.  Because at one end of the table was a time when a boy with Down’s Syndrome was a family’s secret shame, and at the other end of the table there was hope and relief and awareness. And acceptance.

And not just from the mouths of babes, but from the mouths of siblings.

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Food Camp: Our Adventures in Feeding Therapy – Day 25

Good news on this day that marked the beginning of our 6th week of food camp!11988741_10207607577210455_6588517867283322582_n (1)

We have been given a new discharge date, and it is earlier than expected!  Corbin’s last day will be Friday, September 11th.  This means he’ll start back to school on the 14th, and should only be about 3 weeks behind his classmates.  Not too bad, I think.

This was definitely exciting to hear today and I am super proud of how well Corbin is progressing.  Today he tried and ate grapes and peas, but he did toss a lima bean across the room.  Can’t say that I blame him, but still, we have to keep the control.  We also branched outward today and left the sterile, feeding room and had a meal in the bustling hallway.  It was full of constantly moving people, distracting noises, and brand new stimuli.  He did great!  But I think the novelty of the situation helped, and when this gets hum-drum for him, he may be up to his usual tricks of avoidance.

I was with him today and together we cooked pasta with broccoli and he ate it all up. I took the leftovers for lunch – my son cooked me lunch!  Tonight, Mike had Corbin and Annika help him cook dinner and I think this will be a great new bonding activity for the three of them, as well as a proven method for encouraging better eating habits.  And delicious (I ate it while I worked upstairs!  So many wins!

I was so happy today that I felt the need to pay it forward and gave the cafe barista $15 cash to pay for coffees and lunches of whoever came after I bought my strawberry-banana smoothie.  Let’s face it: everyone in that building with us either is a special needs kid, has a special needs kid, or helps a special needs kid.  These staff members do such good work, and as someone commented to me today, bring such a passion to their work, and these families are doing everything they can for their children, that anything to make their difficult days a bit brighter seems more than worth it.  The $15 pales.

As another good friend leaves the program and new faces greet us at the “bye-bye-buggy”, I am struck by how comfortable and safe this community has made me feel, especially considering how confused and put out I felt at the start.  It’s a relief to be understood, welcomed, supported, and celebrated.  I would encourage anyone in a similar boat as us to sail this direction.

Twenty-five days completed – only 8 more to go!


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Food Camp: Our Adventures in Feeding Therapy – Days 19 – 24as

Another week of food camp is behind us.

Someone asked me just this morning how long we had been here and it felt odd to suddenly realize that we’re now the veterans of the program to the newly arrived.  Today marks five weeks in the program.  Wow.

I had to work a lot last week and was fortunate enough to have Grandma Rose and Grandpa able to step in and cover for us.  Plus it was time for them to start their training and get some practice feedings in.  It wasn’t easy for me to relinquish so much control for so long, but it is necessary for all of us.

We are being asked to feed Corbin according to protocol at home more and more.  This also isn’t easy.  The simple food prep for him has me panicking as if I were cooking a full meal.  If you didn’t know, I have (self-diagnosed myself with) Mageirocophobia.  The fear of cooking – it’s a real thing.  Really.  Really, really.

Plus it icookings simply impossible to be distraction-free at home.  Eventually, this shouldn’t be a problem.  Now, though, it adds some stress to the meal.  Corbin is also trying to rebel a bit at home like when we first began at KKI.  New environment = new fight.  And when he does push back, I look around for a feeding therapist to help me and sink under the weight of trying to remember/figure out what to do.  Any ground he is given is just more ground we have to try to reclaim in our pursuit of his eating.  It doesn’t even have to be a new food – if a food he has grown to like is served, but too much is on the spoon, a battle ensues.  Last night he and I were both covered in spit and yogurt because he thought the spoon was too full.

Yesterday’s dinner session was my toughest thus far.  He saw a new food on his plate, spaghetti and meatballs, and immediately began to protest.  By the time we got to forking that food, his game face was on and he was positioned to fight.  There was a lot of spitting, crying, gagging and coughing, whining, pleading.  All of the heartbreaking was from my side of the table, though.  We had to place him back into a booster seat and I needed someone to assist with blocking his flailing arms and head.  I hated every second.  This is why we simply gave up trying to force feed him when he was younger – it just sucks.

Finally, he did cave and take a bite.  And that little [EXPLETIVE DELETED] had the gall to swallow the food and say, “Yummy!  That’s my favorite now!”

Not reacting, and continuing with the session, should win me the parent of the day award.  Because, oh did I have a reaction budding within me.

We are starting to make plans for Corbin to eat lunch and snacks when he returns to school, so I guess we are still on the right track.

We’ve been here a long time….I have no clue how much longer we have to go.


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Food Camp: Our Adventures in Feeding Therapy – Days 17 & 18

Growth and progress, every day.

Corbin no longer needs to be strapped into a booster-style seat and instead sits in a regular chair at a regular table for his feeding sessions.  He is very proud of himself and puts up no real resistance when it is time to eat.  He still reacts with strong aversion when he sees new food on his plate, but, so far, when it comes time to eat the new food, he does it without much a fight.  Guess he’s just using up whatever bluster and protest he has left.

The time has also arrived for us to start integrating our feeding protocol at home.  Eeek!  Friday night, exhausted, I ran to the store to make sure we had a good variety of the foods currently on his list.  I’m a wreck over the measurements of all the foods and making sure he’s getting the right amount.  Simple food prep is still too much like cooking for me and I get so stressed out.

I’ve given him three meals this weekend, as of this afternoon, and though he protests his desire to eat, I will say it’s gone 80% smoothly.  This morning’s meal was touch-and-go for a bit because the oatmeal was too different from what he gets at food camp.  I was a bit panicked about how to handle the food spitting and throwing, and I didn’t know what I was supposed to do when he got up out of his seat. They told me to call in this weekend with any issues, but I did my best and eventually he started eating the oatmeal.  Super proud of both of us for hanging tough!

I can’t believe that within our own home, I’ve been able to feed Corbin: mac & cheese, green beans, peaches, cucumber, strawberries, oranges, vanilla yogurt, and oatmeal.  It’s incredible.

This coming week, Grandma Rose will be on site for more practice, and Grandpa will be stepping up to bat as well.  We’re so lucky to have such a supportive and involved family.

Think I’ll have Daddy handle Corbin’s lunch today…. 😀

Twenty-two days or less to go!


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Food Camp: Our Adventures in Feeding Therapy – Days 14-16

We are three weeks into food camp and progress is being made at KKI.

wpid-20150817_125321.jpgCorbin is eating several new foods each day, some even with gusto and excitement.  The other day he said, “Mmmm, hot dogs, yummy! That’s delicious to me!”  He also piped, “I love quesadillas. Like Casey Jones and the turtles.”  His delight is as pure and honest as is his continued disdain of sweet potatoes: “I want to be done with that now.”

We’re moving forward and it’s time for the caretakers to get trained.  I sat in on his lunch session, and actually fed him his “dinner” last night!  He ate fresh cut peaches, cheese sandwich, and broccoli and cheese.  He’s so proud of himself, and so happy that I’m proud of him, too. I gush.  Today Grandma Rose is beginning her training as well.  Staying firm will be tough for her but I know she can do it. With practice. 🙂

Outside of the KKI building, however, in the real world, time is quickly passing us by.  I can’t seem to reconcile food camp, home, and work, and I am having difficulty fitting all of the day’s demands within the hours allotted me.

My house is a wreck: neither toys nor dishes seem to get put back where they belong. Laundry, both clean and dirty, is piled in everyone’s bedroom.  But Corbin is eating.

Repairs, chores, purchases – all needed and all going undone.  And Annika starts school on Monday!  I had originally wanted to reorganize her room and go supply shopping together.  But Corbin is eating.

Conference calls with clients are taking place by the koi pond, in the car, sitting on metal butterflies, and under ziplines. But Corbin is eating.  wpid-20150817_125315.jpg

I am burning out at all ends. But Corbin is eating.

And soon he’ll be eating more, and more often, and at home, in restaurants, at school.  And Annika will forgive me if her four, pocket-style folders didn’t match properly at the beginning of 2nd grade, or that we’ll miss this one, Back-To-School night.  And my house will eventually be less of a wreck (maybe…to be honest we’re never really good at keeping it up anyway).  And perhaps I’ll be able to do more work at work and less work at home, getting to relax, cuddle with Mike, read a book again.

As long as Corbin keeps eating…then maybe only 14 more days to go.